35 replies to this topic

[GerryL]

Hi Lucky,

Congratulations on achieving PCRU.

I'm just going to hijack the thread once more.

Hi Teds,

It's good that your doc is going to have a look at your marrow just to be on the safe side. The fact that you're feeling so much better has got to be a good sign (though I know that we have people here who have achieved PCRU and still feel physically unwell, but we are all different).

For me today is an exceptionally good day, I actually feel like I did before I started Gleevec. Not sure if it is because I have just got over a virus, or perhaps I've reached the turning point where I'm physically and mentally in a good spot and ready to get on with the rest of my life. Even taking my tablet this morning felt just like taking a blood pressure tablet etc. I bought an exercise bike a couple of days ago and started riding it in front of the TV. I'm only on it for 15 minutes, but will look to increase to an hour.

Though I'm not at PCRU like Lucky (and not sure whether Australian testing will ever tell me if I achieve it), I've achieved MMR and apart from a bit of fluid retention feel normal now and it is this hare's turn to cheer on my turtle friends from now on. I'll keep my fingers crossed that the news is good from your BMB.

Gerry

[MJB]

Hip - Hip - Hooray for Lucky!!! I couldn't be happier for you!

At .0061 PCR at 24 months, I'm right behind you! Maybe we'll have to change the name of our connections group to the PCRU Club! Wouldn't THAT be something!!

IForget

(aka - MJB)

[spnnrmn]

Congrats on your good news

[CallMeLucky]

@Tedsey - Teds you can always hyjack my thread, you know you are one of my favorite turtles .  I'm sorry you haven't gotten to where you want to yet, but I believe you will get there and more important I think back to how you sounded a year ago vs how you sound now and I can't help but be happy that you are sounding better.  Hang in there!

[CallMeLucky]

MJ - I'm so happy to hear about your great status.  It's interesting, at the CML society meeting in NYC I met another patient of Dr. Berman's.  She was just under 1 yr on Gleevec and PCRu.  I know we can't directly attribute how well we are doing to her, but I sure like the track record!

Hope you are feeling well and continue to do well.....

[CallMeLucky]

Just wanted to say thanks to all for the well wishes and congratulations, I really appreciate it.  This board has meant so much to me and I hope I have been able to give back in kind.

I hope you are all feeling well today...

[gark]

Great job!!  So happy to see you are doing so well.  It took me nearly 2 years to get where you are.  Each year I feel a little safer and a little closer to normal as far as managing G side effects.  ( 6 years this October).  Keeo on fighting the good fight.  You are an inspiration.

[LivingWellWithCML]

Congratulations, Lucky!  That is awesome news.

Out of curiosity, what's your daily dose that achieved those 11 month results?  400mg?

[CallMeLucky]

Dan - I'm at 400mg 1x daily.

[Pin]

Lucky, hi - Pinichio here - Congratulations - wonderful news for you

Did they happen to mention to you how many people get to PCRU on Gleevec or at all?

I have just started so I am wondering how likely it is that I will ever get to where you are.

[Trey]

The stats are not precise, and there are the issues of timing ("quick" PCRU vs 10 year PCRU), intolerance/resistance, and second line TKI drugs.  The early stats used to say that about 15 - 20% would reach PCRU on Gleevec.  About 2008 a large Imatinib Long Term Effects study showed 30% achieving PCRU with an average of 4.8 years on Gleevec.  Now the figures are considered to be much higher since there is over 10 years of Gleevec data.  Probably over 10 years most people would reach PCRU who are able to tolerate the drug and have a persistent response.  Others who fail Gleevec but respond well to a second line TKI will have a high liklihood of PCRU over time.  Then there are more drugs coming along in the future.

[Pin]

Thanks Trey,

I have hope then - I had read something that said that only 5%, but I assume this is outdated now.

Just keep swimming then

Cheers,

P.

[CallMeLucky]

Pin - something to keep in mind.  Many people will not necessarily achieve a CMR, but that not such a bad thing.  The main treatment goal is Complete Cytogenetic Response which comes when FISH test and/or BMB is negative.  The next response is MMR which is when you have a 3 log reduction in PCR.  Once you achieve that, you have reached all the treatment milestones.  PCR undetectable is a nice bonus (mostly psychologically) but there have not been studies that show someone in CMR does any better than someone who is MMR for long term survival.

Best of luck

[Bessie]

Lucky,

I am so excited for you!  This is great news.  You have always been a great source of information and help...I read your posts all the time.

Congrats and have a great 4th!

Bessie

[Zu-ko]

I truly happy to hear this great news!

Love, Denise

[Pin]

Thanks Lucky,

I think the psychological apsect would help someone like me a lot!

Going to keep hoping...